MS Q&A with Nurse Piper: Finding a Doctor, Treating Fatigue and More

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MS Nurse Piper Paul responds to your online questions. In this program, Nurse Piper responds to topics that include healthcare and medication concerns, lifestyle issues and the latest treatment options that are available for MS.

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Now, here’s your host, Trevis Gleason.

Trevis L. Gleason:
Well, good evening and thank you for joining us for another 30 minutes of questions and answers with MS certified nurse specialist Piper Paul. I’m Trevis Gleason, your host. As many of our regular listeners know, Piper works with MS patients at Virginia Mason Medical Center in Seattle, and she’ll be answering your MS questions. Piper, it’s great to have you back in the studio.

Ms. Piper Paul:
Thank you, Trevis. It’s always a pleasure to be here.

Trevis:I’m going to ask you a question from Zelda in Ft. Myers, Florida. And she wants to know, “How will I know if my injections are working?”

Ms. Paul:
Zelda, I think that’s a very important question. I am asked this question at least a few times a week on a regular basis. The MS drugs are complicated, and they’re not as easy as some of the other medications used for other disease states. I always like to try to use the example of high blood pressure. When a patient has high blood pressure, they’re given an anti-hypertensive medication. Their blood pressure goes down. They know it’s working. With the MS drugs, it’s a little bit different because we know the drugs are designed to slow down the disease. But how do we know that?

It varies with each patient and with whoever you see at the different MS centers. For us, when we start a patient on a medication, we want to see how they’re doing with regular follow-ups. We have neurological exams, objective data, subjective data and an MRI. The MRI is really important. A lot of times, we’ll do an MRI a year after starting treatment just to see where we are. We don’t have to have one every year, per se. But with all of the objective and subjective data, and coming in and seeing your doctor on a regular basis, that tells you if the drug working. Then, you can look back and say, “You know, I haven’t had any flares this week, and my MRI looks great. The drug’s working.” If you are having a lot of disease activity and it seems like you are having more flares, then that might be a sign that you might need to switch the medication or maybe add a medication.

Trevis:
I’ve heard of something called a pseudoexacerbation. I’ve also heard of silent attacks or silent exacerbations that don’t show up clinically. However, they do show up on an MRI. What about a person who hasn’t had much physical disability progression but they’re getting more MRI activity? Is the drug working, or is it slowing it down?

Ms. Paul:A lot of disease activity may be asymptomatic. I know there’s a lot of controversy about this because you might have an MRI, and there’s tons of activity, but you’re feeling great. Does that mean you would switch drugs? It really depends. There are other things to look at. Maybe you feel good, but there’s something else on your neurological exam. Typically, doctors say if you’re feeling well and you’re doing well, why change it? Maybe the drug’s working, and your disease activity would even be worse if you weren’t on a drug. I think it’s really important to have a good relationship with your physician. You don’t necessarily want to switch something or stop something because of an MRI. A lot of different data needs to be collected other than the MRI.

Trevis:
Sue has written in a question from Lorain, Ohio, “What can I do about pain around the injection site, for days even, after I have taken the shot?”

Ms. Paul:
Well, I would have to make a couple of assumptions. I would assume Sue is on a subcutaneous injection such as Copaxone (glatiramer acetate), Rebif (interferon beta-1a) or Betaseron (interferon beta-1b). Avonex (interferon beta-1a) is IM (intramuscular), and typically people don’t have site reactions with intramuscular injections - sometimes a little bit of pain, but typically not. The subcutaneous injections have site reactions. There are a lot of things you can do to help minimize that. First of all, I think it’s important to get trained by a professional that knows these drugs. All of the drug programs do have nurses now that are knowledgeable in the specific drugs. Typically, they come out to the home and teach you how to give a subcutaneous injection and what to expect. We do training in our office so that we can make sure that the patient understands how to give it.

Make sure the medication is at room temperature. Even though a lot of these do have to be refrigerated, they can be kept at room temperature. Make sure you use autoinjectors. A lot of times, those can cut down on site reactions as well. Make sure that the alcohol is dry, that’s important. Additionally, there’s been recent literature about putting a warm compress on the injection site after you give the injection. It used to be we would tell people to ice it before and after, which is still true. That helps numb it a little bit and helps ease the pain and the stinginess. But sometimes, with Copaxone specifically, they had a recent study that says a warm compress actually helps the site reaction. The other thing that’s really important is to make sure you rotate the sites. Do not use the same site more than once a week.

Trevis:
Sue, I know that from my experience when I was taking one of the interferon drugs with an autoinjector, if I would press too hard with the autoinjector, it would usually cause a little extra pain. So just rest the autoinjector gently on the skin.

For the intramuscular, I’ve heard of patients getting prescriptions for smaller-gauged needles.

Ms. Paul:
Yes. Actually, one is coming out for Avonex soon. They’ve applied to the FDA to have a smaller needle in the medication package insert. A lot of times, people don’t need the needle size that’s given with the medication. It’s important to talk to your doctor or your healthcare provider about whether it is appropriate for you to have a smaller needle.

There’s actually a prescription-strength numbing cream, but it’s kind of expensive. A lot of times we recommend hydrocortisone cream or Benadryl cream to help with the site reactions a little bit if you have burning or stinging. Another thing I wanted to say real quick was Rebif is coming out with a different formula, which should be approved next year. Again, it’s going through the FDA right now. The whole goal is to help with the stinginess and pain of the injection. They know that it’s a concern, and they’re trying to come up with a formulation that doesn’t sting as much.

Trevis:
And, Cheryl in Holiday, Florida, has sent us a question having to do with spasticity in her upper legs. She is wondering if Botox injections can be used to help with that kind of spasticity.

Ms. Paul:
Yes, sometimes Botox is used for spasticity. But I would encourage Cheryl to first work with her healthcare provider. Sometimes you can have more conservative treatments, such as stretching or exercise programs, that can help with spasticity. Sometimes heat actually exaggerates the spasticity, so beware of that. Also, there are a lot of good medications to help with spasticity. The anti-spasmodics, baclofen (Lioresal) and Zanaflex (tizanidine hydrochloride), are both used frequently, and they have pretty good results.

Another thing is a baclofen pump. Some people, who use high doses of baclofen and can’t tolerate it p.o. anymore, have a baclofen pump. It just depends on your degree of spasticity. If those medications have failed or are not helpful, then sometimes we do use Botox. You usually go into a doctor’s office every three to six months, and it’s injected right into the legs where the spasticity is. And it has had great, great results.

Trevis:
Now, you used a couple of terms that I’m not familiar with, baclofen p.o. and a baclofen pump.

Ms. Paul:
Baclofen p.o means by mouth. Typically, we start people on medication by mouth. However, for some people who are on really high doses of baclofen and need more, but they can’t tolerate the side effects, we have what we refer to as a baclofen pump. It’s actually surgical. It’s a surgical procedure. There’s a lot involved and a lot of steps before you would get to a baclofen pump. But I think it’s just important to know that there are a lot of options for spasticity.

Trevis:
When you’re speaking of spasticity, that’s a term that’s bantered around quite a bit. I know that can mean stiffness. But what about twitching and things like that, or restless leg syndrome, is that part of spasticity?

Ms. Paul: That’s different, no. It’s more like increased tone.

Trevis:
So it’s rigidity?

Ms. Paul:
It depends; people describe it in different ways. But increased muscle tone is the spasticity. People describe it as stiff. But people with MS can also have twitching, which is different. You can also have restless leg syndrome, which is a little bit different too. You can also have spasms, jerking and myoclonic jerking. There’s a variety of different symptoms you can have, and it’s important to find out which symptom you’re really having so that you can have it treated appropriately.

Trevis:
So there are different drug therapies and nonprescription therapies for all of us.

Ms. Paul:
For all of us, yes.

Trevis: Speaking of spasticity, the term “MS hug,” for spasticity around the trunk, is that a type of spasticity in a different muscle set? Or is it something different than that?

Ms. Paul:
What you’re referring to is the MS hug, when people feel like they’re being squeezed or hugged around the chest. A lot of people will have numbness and tingling around the chest as well. Sometimes it means that there might be some (disease) activity in the spine, in the spinal cord. We use that term to describe the MS symptoms. It’s usually paresthesias or numbness and tingling and pain, which can be from a spinal cord lesion. Some people have those symptoms without having spinal cord lesions too, but that would probably be treated a little bit differently.

Trevis:Speaking of lesions on the spinal cord and MRIs, I know that a lot of times a patient will just get an MRI on the brain or maybe a little bit down, on the C-spine, the cervical spine). How often do you usually see your patients getting MRIs further down the spine?

Ms. Paul:
Typically, when a person is diagnosed, we want to know baseline. We get cervical and thoracic areas of the spine. We do that because typically you won’t have any demyelinating plaques farther than those areas. If you do a lumbar spine, you might be looking for a herniated disk or something else. But usually MS is not in the lumbar spine. It’s more in the cervical and thoracic. However, it really varies depending on patient’s symptoms and then their disease state. If a patient never had lesions in the spine and they got a baseline, they might not get an MRI on the spine on a regular basis.

If they had some new symptoms that might sound like a spinal lesion, then they might get an MRI. Some doctors don’t even give spinal MRIs. You can still be treated appropriately without it. It just gives you a little more information. However, they are important when you’re making a diagnosis. With the MS criteria, maybe there’s “x” amount of lesions in the brain, but you don’t formally meet the criteria. That would be another reason to have an MRI of the spine, just to check and see if there was any activity there.

Trevis:
Recently, on the HealthTalk blog about MS, someone had mentioned transverse myelitis or a singular demyelinating incident. They are not diagnosed with MS, but could it be the beginnings of MS?

Ms. Paul:
There are a couple of things you said. You said one episode. But there is a term that we use called “clinically isolated syndrome.” That means a patient has had one attack. By the MS criteria, you have to have two separate attacks in space and time. There’s a lot of research being done right now, and some of these drugs are approved for clinically isolated syndrome. I think Betaseron just got approved, and I know Avonex has been approved. A pretty high percentage of people who have clinically isolated syndrome will, in the next five years, go on to develop MS. These are people for which early treatment can help. We do have data that says if you start treatment early on the clinically isolated syndrome, it can actually slow down the time of diagnosis.

It’s important if you’re having an event or symptoms to talk to a doctor who really knows MS in and out so that they can define that. Neurologists do have criteria that are pretty specific to MS. Transverse myelitis is an episode that usually happens in the spine. It’s similar and it’s an event. But they may not meet the criteria because you have to have so many lesions in the brain. Really, that’s one event. If you had that coupled by another event in time, then you may meet the criteria for MS. But it’s important to still talk to your healthcare provider when you have clinically isolated syndrome or transverse myelitis because your risk of developing MS is greater.

Trevis:
I had mentioned the HealthTalk blog on living with MS, and I write that. We post about three times a week. Make sure that you check that out, along with several other things. The MS programs on HealthTalk aren’t the only thing we offer by far. There are several other disease networks that you can take a look at on the HealthTalk Web site. I read the blogs from all the other disease groups, and it’s very interesting. Additionally, you can always e-mail the Ask the Doctor column. We do our best to make sure that we get a wide variety of questions and answers for you as well.

From New Buffalo, Michigan, Deborah writes, “If I forgot to take my shot, what happens?”

Ms. Paul:
I first must tell Deborah she’s not alone. I ask this question to patients on a regular basis: “How many have you missed?” First of all, I have to commend everybody who’s on injectables. It is a big deal to give yourself an injection every day or every week. So you’re not alone, Deborah. Really, there aren’t any detrimental effects that will happen if you miss your medication. If you miss your medication, of course, it’s not working. But it’s not one of the medications that if you miss a dose, something really bad is going to happen. With that said, I encourage everyone to stay on their medication.

With the interferons, it is really important not to go too without your medication. Why that’s important is because a lot of people start at a really small dose with the interferons, and then they titrate up. When your body gets used to interferon, you’ll have a decrease in flulike symptoms. But if you miss the medication for a long time, you can have side effects. We will use Avonex for example. If you’re on Avonex (interferon beta-1a) and you miss a dose, you’ve already gone a week without the medicine. The longer you go, the more likely you’re going to have side effects like you did in the beginning. I’ve had people who have been on it for five years, and they do great. Their side effects are manageable, and then they miss a dose. Sometimes they have to start over and start using a small dose again. We all know things happen, and missing a dose here or there happens. I encourage you to take your medicine because none of these medications work if you’re not taking them. But don’t be afraid to tell your healthcare provider, “Hey, I missed a dose.” We hear it every day.

Trevis:
If a patient realizes that they’ve accidentally missed a dose, misplaced the calendar, baggage got lost in a plane or something like that, is it a good idea to call your healthcare provider and let them know the situation? For instance, on Avonex, would the doctor possibly say, “Well, reduce your dose by half to titrate yourself back up again.”

Ms. Paul:
That may depend how long you’ve gone without the medicine. It’s a good idea to tell them because, and this goes back to our first question, we’re trying to find out how you are doing on the medication. When we find out that you’re only taking your medication three out of seven days, we need to know that. I think it is important to know, if we’re talking about the treatment plan, how many doses you miss.
Trevis:
The reason the flulike symptoms occur is because the interferons are a protein. Your body is recognizing that as a foreign protein and is trying to fight it for a little while until it’s used to it.

Ms. Paul:
It is. And we’re not giving you the flu, though.

Trevis:
Speaking of the flu, it is coming on to the cold and flu season. We do speak of this fairly often on HealthTalk, about the concept of taking a flu shot. Do you have any recommendations as a healthcare provider?

Ms. Paul:
Again, you should talk to your healthcare provider. We do recommend the flu shot because there are so many different strains out there now, and a lot of them can be severe. The MS Society now recommends it as well. I think at one time, they were neutral and said to talk to your healthcare provider.

Trevis:
It’s important to remember that that’s not a live flu virus that’s being injected.

Ms. Paul:
We actually don’t recommend getting the live flu virus.

Trevis:
That’s the nasal mist, right?
Ms. Paul:
Yes, the live flu virus is in the nasal mist.

Trevis:
We have a question from Susan in Seattle, “Are there any other acceptable areas to give myself injections other than the arm, tummy, hips and legs? Can I give them on my thighs or the backs of my legs, etc.?”

Ms. Paul:
I would recommend that this person talk to someone who knows these injections inside and out. You can go to a lot of different areas than what they say on the package insert. Where you can pinch an inch you can go. But you do need someone to make sure that that area is okay. With medications like Copaxone (glatiramer acetate), you’re using it every day. So you need to get creative with your sites. Just make sure that you never inject in a site that’s still red. But, yeah, there are different areas you can go. It is important to talk to someone who really knows the medications and can show them to you.

Trevis:In Massachusetts, Miriam sent us an e-mail question, “What precautions should I take while I am starting Tysabri (natalizumab)?”

Ms. Paul:
There are actually a lot of precautions for you, Miriam. The FDA has a mandated program with Tysabri, which is the TOUCH Program. Every patient who gets Tysabri is enrolled into the TOUCH Program. Every healthcare provider who prescribes it is enrolled, and every center has to be a certified center. They are very strict, and it’s actually pretty good. They do make sure that you see a healthcare provider on “x” amount of visits. They make sure you get MRIs. You have to go through a checklist prior to every infusion. That checklist goes over new symptoms and things to look out for. If you are thinking about getting Tysabri or you are, then your healthcare provider should go over all of this with you. It’s a pretty complex program.

Trevis:
Kenneth from Virginia is asking a question that I think a lot of us are asking right now. Kenneth asks, “Will taking supplements or foods that will boost my immune system be a good or a bad thing for those of us living with MS?”

Ms. Paul:
I think this is a really important area. I’ve gone to many patient programs and have asked how many patients use complementary alternative therapies. I would say at least 50 percent do, and maybe, even more. I tell people there’s so much information out there, and it is hard to gauge it all. I usually tell people to go to the National MS Society Web site (nationalmsociety.org). They have pamphlets about vitamins and minerals, and also complementary alternative medicines. There’s also the Rocky Mountain MS Center (ms-cam.org), who are the gurus of complementary alternative medicine. They have a lot of information about MS and this question.

Anything that boosts your immune system, supplements like echinacea or zinc, may be harmful. We don’t know for sure, but we think they could be harmful in MS because it is an autoimmune disease, and we think that your immune system is overactive. A lot of the drugs that we use actually suppress the immune system. Thus, you wouldn’t want to take something that would actively boost your immune system.

You do need some zinc, but not any extra zinc or echinacea.

Trevis:Ed in Quincy, Mass., asks this question, “What medications can be used to treat the MS side effects of depression?”

Ms. Paul:
I think it’s important to recognize depression. I do think all of the medications or the SSRIs (selective serotonin reuptake inhibitors) are used to treat depression in MS. A lot of our MS patients are on those. I would say more than 50 percent of MS patients have depression at some time. It is really important, and it’s real. You need to talk to your doctor about it if you feel that you are depressed. They can talk to you about seeing a counselor. Also, it could be your medication that is contributing to the depression. Or it could be your fatigue or bladder problems. A lot of different symptoms can make it seem like you’re depressed. It’s important to know if something is making it worse or if it is it truly depression.

Trevis:
Our last question is from Kathy in Idaho. Kathy asks this: “Are there any studies, to your knowledge, about hormones and their effects on MS?”

Ms. Paul:I know that there are studies being done right now. I think they’re in Phase II, and I know that there is one study being done at UCSF (the University of California at San Francisco). It’s an important area because we know that when patients are pregnant, sometimes they seem to go into what we would call a remission during pregnancy. They are trying to find out is it safe to give women more hormones to try and put their MS in remission.

Trevis:
We thank you, Piper, for joining us. It’s always a great experience and our half an hour certainly flies by. Can you take a minute and give some folks some final thoughts before we head into the holiday season, which of course can be kind of stressful?

Ms. Paul:
With the holidays, everybody gets a little bit stressed. Try to relax and do not do too much. Enjoy yourself. Recruit your friends and family to help you if you have too much on your plate. Don’t try to be superwoman or superman. Just try to relax and enjoy the holidays. I hope everyone has a great holiday season. And it’s always an honor to be here.

Trevis:
Well, thank you, Piper.

From our studios in Seattle, Washington, and from all of us at HealthTalk’s Multiple Sclerosis Education Community, I’m Trevis Gleason. We wish you and your families the best of health.

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